Summer Safety Tips

Summer is finally here! Today is a good opportunity to remind us all about recommended precautions so that we can enjoy the season and avoid risks that accompany warm weather.

Here are a few tips and reminders to take good care of ourselves:

Stay hydrated. We all need more when it’s hot outside. Jazz up your water with lemon, lime or fresh fruit for a tasty and refreshing treat! If you wish, keep track of your water intake with a free app.  

Sunscreen Protect yourself while outdoors. A number of medications warn to keep out of the sun for extended periods of time, so be sure to double check labels. When you are in the sun, wear a hat and sunscreen (one that provides broad spectrum coverage). Here is more helpful information on sun safety.

If lymphedema worsens during warm weather, learn here what will help and what to avoid.

Take advantage of the growing season by eating fresh fruits and vegetables! Find your local farmer’s market here.

If you love gardening and the outdoors, wear gloves and other safety gear to avoid cuts, scrapes and insect bites. Here’s a great guide to avoid insect bites this summer!

Exercise offers many benefits, but please be safe when engaging in physical activity, especially when outside where you can easily overheat. Check out a few exercise safety tips here.

Remember that it is a gift to yourself to say “no” if you just want to stay home and relax. While receiving invitations is a compliment, honor when you aren’t feeling up to it.  

Children are often provided with many fun opportunities during the summer while school is out. If you are feeling overwhelmed with the idea of planning, ask for help and know that friends and loved ones are ready to assist.  

Summer is the perfect time to relax with activities you may have delayed like reading a book or beginning a nourishing hobby. Take advantage of the longer days!

Whether or not you’ve tapped into YSC’s resources, know that they are available to you when you’re ready: .

–  Talk with someone one-on-one through SurvivorLink.

–  Meet in-person with other young survivors through your local F2F group.

 Chat with other young women from the comfort of your home through the upcoming Online Video Support Groups, starting August 1. There are three available including 30 and Under, In-Treatment and Metastatic.

Our Community Boards have many forums and are on a 24/7 platform.

 

 

 

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Categories: Taking my Body Back

Nominated Cancer Kween

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The Cancer Kween and her Queen.

“Man, it’s a good thing that we’d been together for over 6 years because HOW could I ever explain this to anyone else?!”

Yup, that was the first thought that ran through my mind when I was told I had to have a mastectomy. The idea of cancer killing me was something I never initially thought, probably because I hadn’t fully processed what it meant to have breast cancer. I mean, cancer couldn’t be all that bad considering how my grandmother had beat it a few times. Dying was really the last of my concerns! But the thought of ever being single again and having to stop, what I would assume would be a great moment, to explain the “hockey stick” scar and the one missing breast replaced by a sweaty sock seemed unbearable!!

My partner and I had been together for some time before my breast cancer diagnosis, which is why I felt much better about my decision to have a mastectomy.  I felt like she would be the last person to care because she had seen my body backwards and forwards, so what would it matter right?!!? I discussed my decision with her and she reassured me that our relationship and partnership as well as her love for me and the way she looked at me wouldn’t change. It’s important to note that although we’d been together six years prior to me diagnosis, you’d think we had just met. Needless to say, our sex life wasn’t lacking in any area and I wasn’t going let losing one or both of my twins effect that area either… or so I thought!

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My Queen comforting me through treatment.

After surgery and during treatment I did my best to remain the Kween that my partner had held me up to be. She had always referred to me as her Kween because in our relationship I was her provider. I was the one who would have things under control and reassure her that all was safe in the Queendom, as we knew it. I was her rock and now I was a wounded Kween. I was broken mentally, spiritually and, most importantly, physically! I was less than a KWEEN!

I went from “Man, it’s a good thing we’d been together over 6 years!” to “MAN! It’s a GOOD thing we have been together over 6 years because who would EVER want me now?!”

Well, she did! AND, she made it a point to let me know it everyday. When many others would have and did give up on me, she didn’t. She nominated me her Cancer Kween and I gladly accepted.

 

But with the nomination came the compromises!

1.) We agreed that as her Kween, I would be safe at all times. I could let go and trust her to handle things. In turn, I had to agree to let go of control, which can be hard due to my more dominant demeanor.

2.) We agreed that the “Pre-Cancer” Kween was gone as we knew her. She assured me that she would accept the “new me,” however or whoever that may be. In turn, I agreed to let her in on all the new things, good or bad, I was learning about the “new me.”

3.) We agreed that the communication in the Queendom could not and would not be broken! It’s essential that we communicate during our survival journey. I agreed to not only communicate with her about my feelings, hopes and dreams, but would also communicate with my doctors on these things so they’d understand our plan and help us work towards it.

IMG_2456I would be lying if I said that things hadn’t changed, but things change in all relationships. And people change, whether it has anything to do with cancer or not. The one thing that changed the most for me was my new found respect for my role now that I’ve been crowned her Cancer Kween.

Remember, in all great battles the “Queen” plays a vital role that leads to victory! My cancer battle would have been completely different in the history of my life hadn’t it been for the support of my partner, my Queen!

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Thank you Nikki for sharing how breast cancer impacted your relationship with your partner and Queen.

We understand that breast cancer greatly impacts relationships from body image and intimacy to communication with your significant other. Sometimes connecting with other young women affected by breast cancer and sharing your own experiences can be helpful.

Below are a few resources to connect with others:

Connect Online through community forums, online video support groups or the Private Facebook Group

Connect In Person through your local Face 2 Face Network

Connect One-on-one through SurvivorLink

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Let’s Talk About Foobs

Dana-Donofree-of-AnaOno-Intimates_Photo-Credit-Nikki-Riley-PhotographyDoes anyone want to talk about foobs?

Sure, everyone wants to talk a lot about boobs. When am I going to get them? How big are they going to be? Some want bigger, some smaller, some have Instagram accounts full of selfies in body-con dresses with puckered lips and padded bras because hers are just right.

They are retweeted, shared and liked every October when college students go all Girls Gone Viral using their perky, healthy breasts as a catalyst for disease awareness.

But, foobs are not boobs.

When you get breast cancer, boobs are (in general) lopped off and put out for pick up on hazmat day.

That is, of course, after lengthy discussions about exactly what to do with them. Should we keep one, get rid of one? Should we just get in there and cut the vagrant out hoping what ails it does not spread? Do we rebuild? How do we rebuild? They are pressed flat between plastic, squeezed, needled, examined, pinched, lifted, drawn upon. They are touched by more strangers than heirloom tomatoes at a farmer’s market.

And then, radio silence.

Once we make that decision, they’re never to be spoken of again.

And I want to talk about foobs. I have wanted to talk about foobs since I arrived home with tubes and bulbous devices sticking out of my sides. I have wanted to discuss their squareness, their hardness, their alien presence underneath my Marshalls clearance robe; the only thing my mom could find on such short notice.

Because, well, I didn’t know anything about foobs. Because no one talks about it.

I suppose I shouldn’t say no one. Bring up the word reconstruction in a cancer klatch and everyone will begin to clamor about their experience or opinion on the subject. Bring up the word mastectomy in conversation on say the D train and watch how men and women who’ve never had to make such a decision (or known someone who had) instantly stand further away from you.

Dana-Donofree-of-AnaOno-Intimates3_Photo-Credit-Nikki-Riley-PhotographyWe need to be able to have these conversations. Not just between survivor sisters, BFFs and spouses, but as a collective societal whole. Because the “pink ribbon get on with my life” breast cancer does not happen to everyone. Because even though global media has shared beautiful black and white portraits of women flat and scarred, social media bans images of reconstructed breasts. Because when I walk into a boutique looking for a summer sundress, no one can tell what lies beneath is nothing but silicone and skin — a sensationless, rock-hard permanent prosthetic that likely won’t agree with half of the fashion options available to me.

I want women to know they are not alone. I want them to know someone else understands that anguish, that feeling of loss and the nagging suspicion they are somehow a broken doll.

Of course, I get it, this is not a new subject, per se. But it is a clandestine subject all the same. We can talk about breasts (and see them) ad nauseum. We can celebrate scars and feel empowered by women who choose to remain flat, but reconstructed breasts seem to give people the heebee jeebees.

You see, I recently pitched my intimates line, AnaOno, to a room full of savvy, seasoned businessmen and business women. In previous such meetings, I didn’t always seem to get across the point that our bras served a very specific purpose and that the wireless bralette dujour in the major market wasn’t always an answer for us reconstructed ladies. They were inspired and moved by my story, but they weren’t ready to pull the financial trigger. The need, pardon the pun, wasn’t sexy enough for them.

So, I made the decision to switch it up. A mastectomy is an amputation, and I was going to present what that looked like and what breast reconstruction looked like. I figured people were still considering it a nice perky boob job by a cosmetic surgeon, rather than a radical amputation with a permanent prosthetic done by a plastic surgeon.

I can honestly say even I, at first, thought it was a little jarring — seeing the images purposefully juxtaposed within my presentation. And I lived through the ordeal! The stitches from a TRAM Flap surgery and expanders with drains do resemble carnage. Because they are carnage to a certain extent. Body parts have been removed. Skin and tissue has been moved around. There is blood and scarring. I shudder because I remember the pain, the insecurity, the emotions and the fear surrounding my own surgery and brutal chemotherapy.

But to see this room full of men and women recoil and grimace at those same images and constructively suggest I remove them from further presentations made me angry. Many of us have looked like those pictures and it is not only what saved our lives, but it was also a decision we made as young survivors because it was what we wanted. No one questions an amputee if they choose to have a prosthetic, an implant or nothing at all. No one tells Aimee Mullins not to change her legs on a TED stage. Why is someone telling me to put away the foobs?

Why is Facebook telling women to put away the foobs?

Why is there backlash against women who choose to get foobs?

Why are we not talking about the exhausting process, physically and emotionally, a woman goes through to get her foobs? (And while we’re at it, that sometimes the foobs fail, the surgeries linger over years, the implant doesn’t take and the woman on the other end of the ordeal is scarred not only on her body, but along the lines of her fractured self-esteem?)

So I encourage you to talk foobs. To tell your story in the comments. To share this story on Twitter or Facebook and explain to others what your life is like with foobs and WHY you decided to get them.

In this process and life that is cancer, whether you are newly diagnosed, in treatment, in maintenance, stable, NED or still living with it as a chronic, terminal illness, we all start at the same place. Terrified and wearing an open-back itchy hospital gown. We continuously think about what, if anything, the future holds. And we go into warrior mode and one day wind up searching for someone who can tell us, “Me, too!”

To all of you card-carrying members of the Friends of the Foobies club, I am saying to you “Me, too.” Let’s get start talking about it.

So maybe one day we’ll be sitting in a movie theater or flipping through a magazine and we’ll see one of our celeb recon sisters brave enough to go topless or have a sex scene with her own body. And the audience won’t recoil in horror because we made the difference by starting that conversation and being the pioneers.

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A huge thank you to Dana Donofree for sharing her thoughts on body image and helping to start an important conversation to help empower other young women affected by breast cancer!

To learn more about body image, check out the resources below:

Living Your Best: Quality of Life

Newly Diagnosed Navigator

Post-Treatment Navigator

Long-Term Navigator

Metastatic Navigator

 

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June Research Round-up

Staying on top of recent breast cancer research news, especially when it pertains to young women, is essential. It is also important that young women participate in ongoing research so that our population is well-represented in data and the results meaningful to young women.

We pulled together a number of recent research articles and ongoing studies or surveys that may be of interest to you. Be sure to follow us on Facebook and Twitter, as we post new articles and studies as they become available.


Studies Seeking Participants:

Metastatic Breast Cancer Project
YSC is an advocacy partner in this unique research initiative that will help to transform our understanding of metastatic breast cancer. If you have metastatic breast cancer, join a nationwide movement of over 1700 patients, doctors, and scientists by sharing your tumor samples, your medical information, and your voice. Together, we can speed the development of future therapies.


New Research Opportunity for Spanish Speakers!

Eres Latina y vives con cáncer de mama metastásico? Por favor tome nuestra encuesta acerca de su experiencia con su proveedores de cuidado de salud cuando le diagnosticado po prima vez metastásico o etapa IV?

English Translation – Are you Latina and living with metastatic breast cancer? Please take our survey about your experience talking to your health care team when you were first diagnosed metastatic or stage IV.


Sexual Adjustment Throughout Breast Cancer Diagnosis and Treatment
This study is to learn what women affected by breast cancer are feeling about their bodies, their intimate relationships and sexuality. Open to all women diagnosed with breast cancer.


The Impact of Chemotherapy and Radiotherapy for Breast Cancer on Cognition and Functional Performance
This study is to find out how cognition and the ability to do everyday activities changes in the 6 months after the completion of treatment for breast cancer. Open to women nearing the end of chemotherapy or radiotherapy.


Share Your Experiences with Insurance Coverage of Hereditary Cancer Services

Complete this survey and help FORCE understand the current landscape for insurance coverage of hereditary cancer-related screening and preventive services. We want to hear from you if you have had difficulty getting insurance coverage OR if your insurance has covered everything OR if you don’t have insurance at all.


Recent Research Results:

Two Years of Adjuvant Tamoxifen Provides a Survival Benefit Compared With No Systemic Treatment in Premenopausal Patients With Primary Breast Cancer
The aim of this study was to evaluate the long-term effect of 2 years of adjuvant tamoxifen compared with no systemic treatment (control) in premenopausal patients with breast cancer over different time periods through long-term (> 25 years) follow-up.


Outcomes Matter: The Power of Prospective Outcomes

A recent SEER-NCI study looked at outcomes data of over 44,500 breast cancer patients who had Oncotype DX testing and found that at 5 years, patients with a recurrence score less than 18 had an excellent breast cancer survival rate using hormone therapy alone (no chemo).  Breast cancer specific mortality was less than .5% in node negative patients and 1% in node positive. For Infographic: Prospective Outcomes Infographic


Exercise Reduces Cardiovascular Risk in Nonmetastatic Breast Cancer Patients

A recent study showed that exercise reduces the number of cardiovascular events in nonmetastatic breast cancer survivors. Those patients adhering to national exercise guidelines (about 9 hours per week) had a 23% reduction in the risk of cardiovascular events.


Boston College Women’s BRCA Study
Dr. Sharlene Hesse-Biber at Boston College is conducting a study about the genetic counseling experiences of women who are BRCA positive. Through the Boston College Women’s BRCA Study, they hope to address the substantial lack of research on the ways that women deal with a positive test result for the BRCA 1/2 gene mutations. This project will make a significant contribution to understanding of individuals’ experiences with genetic testing, how this impacts families and relationships, and how genetic counseling should approach the BRCA experience for women. If you have any questions please contact hesse@bc.edu.

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Don’t forget to follow us on Facebook and Twitter, for the most up-todate articles and studies focused on young women and breast cancer. 

 

 

 

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Categories: News & Updates

Happy Father’s Day!

This Sunday is Father’s Day and we’d like to take time to recognize the important role father figures serve in supporting the young women in their lives facing breast cancer. These men are there for you from diagnosis through treatment and beyond. They offer a shoulder for you to cry on, a hand to hold when you need strength and their undivided attention when you need someone to listen.

Thank you to all the amazing co-survivors out there for ensuring young women aren’t facing breast cancer alone!

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Grace Quote

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Did you know that we also offer support for co-survivors?!

We understand that breast cancer doesn’t just affect the person diagnosed, it also affects the people that surround and support them. We offer a number of useful resources and tips to ensure you’re receiving the crucial support you need to help you in your vital role as a co-survivor and caregiver.

– Caring For You
How to Help
Handling Finances
– Get Involved
Caregivers’ Bill of Rights

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Next Steps In Our Adoption

A few of weeks ago, my husband and I decided to move forward with adoption. I thought it might be helpful to provide some advice on next steps for those considering the same.

After the first big step in deciding to adopt, you’ll need to consider the different types of adoption. As I mentioned previously, it’s definitely worth finding your nearest version of Adoptive Parents Committee and attending a conference or meeting. Here you can connect and learn about the different routes to adoption. I also found the How to Adopt A Child Guide on Adoption.com to be a great resource.

This guide is particularly useful in walking you through the difference between ‘agency’ and ‘private’ adoption. Agencies will help you with the whole adoption process, from the legal stuff to finding and matching you with a birth mother. While with private, the person or couple will do a lot of this themselves and hire an attorney for the legal parts. Which process you decide on is a personal choice and worth exploring early on. You’ll also need to look into the funds required for adoption, as it’s definitely an investment of money as well as time.

After a lot of research and discussion, my husband and I have decided to take the private adoption route. We’ll need to hire an attorney who will undertake all the legal paperwork, along with a social worker who will conduct a home study, which includes multiple interviews and a home visit.

Once you’ve decided on either an agency or private adoption, you’ll need to collect the required paperwork – an activity that can take some time! Among other things, you’ll need to provide:

 – Background checks
 – F
ingerprints for the Court
 – F
inancial information
 – L
etters of recommendation from non-family members
 – H
ealth insurance information
 – M
edical backgrounds

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My husband and I can’t wait to be parents!

While this may seem like a lot, my husband and I see it as a project. Now that we’ve figured out what we need, we’re working together to collect everything. It’s important to be organized and my advice would be to split up the tasks, otherwise it can get confusing!

So that’s where we are right now as we go through the adoption process. We’ll continue to keep you updated as we move forward in becoming parents!

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Grace Foxton, YSC’s Northeast Regional Field Associate, has been sharing her adoption journey with us. Be sure to check out her first post Our Decision to Adopt. As a young woman affected by breast cancer, she hopes her experience will help other young women with the logistics of the adoption process.

 

 

 

 

 

 

 

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If I Can Do It, So Can You!

“Hi Dad. Do you mind if I stay with you in April? I’m planning on riding in the Tour de Pink for breast cancer survivors.”

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Amie meets Minnie before the start of TdP South

That was how the phone conversation started last fall when my daughter, Amie, told me about her intent to celebrate her one year anniversary of being cancer free by riding 200 miles over a three-day period, from Disney World to Jupiter Beach. Since we live in Orlando, she called us to ask that question — which was silly, because the answer was obvious. The only question I had was whether I wanted to ride with her. Without thinking about it too long, I told her I’d do it too.

I was not all that concerned about Amie’s ability to complete the ride. I knew how tough she was. I was her USSA club swim coach when she was in high school. She was the team’s premier distance swimmer. I also slept in the hospital when Amie, only 28 years old then, had her mastectomy. I saw her refuse pain medications. When she wanted to get out of bed at 3 a.m., just 10 hours or so after the operation. We walked all over the hospital that morning.

I should have been a little concerned about my ability to complete the ride. Even though I’d run lots of marathons and completed plenty of triathlons, nearly 30 years had passed since my last lengthy bike ride. Before retiring from teaching and coaching, I’d retired from the Marines. Marines suffer from the common delusion that we can do anything, especially physical things, albeit with a little preparation. Two weeks before my 65th birthday, I was going to ride 200 miles with my daughter; no problem, I thought.

I took my 20 year old mountain bike down to the local bike shop to see if it could be reconfigured with thinner tires and maybe a tri-bar. The service manager did his best (but failed) to keep from laughing. He tried to talk me into a bike way past my budget. Eventually, I bought a road bike online and assembled it in my garage. I sent a picture of it to Amie; told her I was getting ready. That was four months from the Tour de Pink’s inaugural South ride.

Neither of us was fully prepared for what was in store. Maybe I should say “in sore.” I’d done the physical preparations for my legs, lungs, and heart conditioning. But my rides were, at their longest, 90 minutes and not that many of them. There are two areas where a ride longer than 90 minutes takes it’s toll, areas that I’d not considered. First is the numbness in the hands — the kind that makes you lose all sensation of your grip on the handle bar. In fact, there were times I wasn’t sure I had a handle bar. The second, and most critical for me, was the capacity for the seat to turn skin into a state of raw, painful pulp. I think a rider summed it up best at the start of day three, as we left Club Med in Port St. Lucie, when he declared to his friends “I think my ass is holding my brain hostage.”

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Amie crossing the finish line on day three!

In the end (no pun intended), memory of the pain dissolved while the memory of the people we met on this journey never will. Because I live in Orlando, I’ve become a big fan of Kyle’s Bike Shop, who provided all the road assistance at Tour de Pink South. He even provides locally brewed beer on tap in his shop while your bike is being serviced!! The ride marshals were some of the greatest folks we could ever expect to meet. They nurtured, encouraged and provided sage advice at just the right times throughout the ride. The YSC staff would go to any extreme to make sure the riders, and even spectators, were well taken care of — beginning weeks before the start and continuing well after the final rider finished. But most moving for us were the many stories. Some were about victories, some were about fights lost valiantly by the most uncommon warriors of life. There are no words to adequately describe the ubiquitous power of hope and strength present throughout those three unforgettable days.

It was our first Tour de Pink and as we drove home afterward, we found ourselves already planning for the next.

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If we can do it, you can do it!

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Has Bob’s incredible account of his first TdP ride inspired you?
This ride is for everyone — whether you’re a young woman affected by breast cancer, a co-survivor riding in support or memory of loved ones or someone who just loves to cycle. You can select a one or three-day ride and they’re fully supported with bike and motorcycle marshals, support vans and ample rest stops. Three-day riders are provided hotel accommodations and all meals.

Consider joining this amazing rolling community by registering for an upcoming Tour de Pink ride:

East Coast, September 16-18, 2016
Ride from scenic Bucks County, Pennsylvania, to the beautiful beaches of Cape May, New Jersey.

West Coast, October 14-16, 2016
Ride from the beautiful beaches of Ventura, California, to the breathtaking views of Encinitas, California.

South, 2017 Date TDB, Registration opens this Summer! Learn about the 2016 ride.

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Learning to Love My Body Again

In October 2015, I saw a post on the Young Survival Coalition (YSC) Facebook page about a show called “Skin Wars.” YSC is an organization that supported me after my breast cancer diagnosis. They were working with Skin Wars to reach young breast cancer survivors for an upcoming episode. I had never heard of the show, but when I learned it was about body painting, I was interested. Body painting was on my “bucket list.”

Courtney and kids

“My daughter Sedona’s graduation from the University of San Diego last May. I didn’t think I’d be here to see her graduate from kindergarten, much less college. My other kids are Sage, Sienna and my son Slayton.”

I submitted my info to YSC and got a call from the show. Upon learning I would be required to stand nearly naked on national television while being painted from head to toe, I had second thoughts! However, October was the month of my 19th Cancerversary as a two-time breast cancer survivor and this looked like a fantastic way to celebrate being alive.

I haven’t been naked in front of anyone for years. I’ve been a single mom of four kids since 2008 and I rarely date. Without clothes on, I look like the patchwork doll from Nightmare Before Christmas. I have scars everywhere from my nearly 20 surgeries since my first breast cancer diagnosis at the age of 33. My second diagnosis was just a year after my first treatment ended. I also found out that I carry the BRCA2 gene mutation.

I am butchered from my neck to my rear and under both arms, having had both breasts removed and reconstructed. My gluteal flap reconstruction in 1995 nearly killed me. My back is scarred from a partial latissimus flap and a melanoma removal. My right breast is missing a nipple and is indented and shaped oddly. It is also quite a bit smaller than my left breast. I feel ok in clothes, even in workout bras and bathing suits. But I don’t feel good at all about myself when I am naked. I refuse to look in a mirror and get dressed in the morning as quickly as possible. My body image certainly gets in the way of me wanting to date. In a world of perfect, airbrushed women, where do I belong?

I talked to my kids about doing the show. I have a 10-year-old son, two 14-year-old daughters and a 22-year-old daughter. My three younger kids are adopted, as breast cancer not only took my breasts and my hair, but it also took my fertility.  My girls are just 13 days apart and raised like twins. My oldest (my only biological child) found out at the young age of 19 that she, too, carries the BRCA2 gene mutation.

My kids were all for me doing the show, so I went way out of my comfort zone and said yes. I was the oldest breast cancer survivor model on the show, at age 52, and the only mom. My assigned painter was also the oldest on the show and the only mom, so we were meant to be a team!  

Skin Wars Season 3 Episode 307Once on the studio lot, we were asked to change into black leggings and pasties for the upper body painting. I was terrified, as I looked around the room at the other girls, who were all younger, thinner and prettier. But this was a great group and we bonded quickly. We were all diagnosed with cancer at a young age, and all doing something out of my comfort zone.

There were five body painters, including a few men. Again, I was terrified. I hadn’t had a guy look at me or touch me in years.  Thank goodness I was paired up with one of the female painters, and then the work began. I decided that I would not look around to see what anyone else looked like as they were being painted and I would not catch a glimpse of myself, either.

When the time was up, my painter picked up a mirror and showed me her creation. It was at this moment that I understood the expression “It took my breath away.” Seeing myself look so beautiful without clothes literally took my breath away – and then the tears started to flow. I looked at the other young survivors, each with a part of their story painted on their beautiful bodies.

Next came the full body challenge. We got into our undies and pasties and headed down in our pink robes. For this challenge, our painters listened to our stories and then painted them on our bodies – head to toe and front and back. Again, I was in complete shock at what an amazing job my painter did.  I looked beautiful, like a princess warrior! My story was there for all to see – my BRCA gene mutation, my kids, my breast cancer 60-mile walks (I have completed 14), my Pink Wings (I have a website called Pinkwings.com and my teammates, family and I wear Pink Wings on all my Cancer Awareness walks).

To say this experience was amazing is an understatement. It changed my life, the way that I feel about myself. I wish there was a way for every survivor to have this opportunity. I have never felt so beautiful and powerful in my life….and to think I did it NAKED!

My advice to those who are dealing with body image concerns is to take time to let your body heal after the torture it has been through with breast cancer.  Then take chances, do something out of your comfort zone, and get out of your own way, as it is the only thing stopping you from seizing the day! I feel more confident and definitely more empowered after my appearance on Skin Wars. Pushing myself outside my comfort zone gave me new perspective, and I wish the same for every young survivor.

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Interested in watching? Set up a Viewing Party at home or a local spot so you and your friends can celebrate these amazing young women as they share their survivor story with the world through amazing body art. While you’re watching, you can also join the Skin Wars’ new interactive play-at-home game: www.playskinwars.com!

You can tune into this very special breast cancer awareness episode of GSN’s Skin Wars on Wednesday, June 8 on GSN at 9pm ET/PT (8pm Central). The episode features five young breast cancer survivors, including Courtney, who will share their stories that are translated into art by the talented body painters who are competing on the series for a $100,000 grand prize. The episode will feature two body painting competitions that will showcase the compelling story of each young survivor.  Skin Wars is also donating $10,000 to the Young Survival Coalition in honor of these brave models.

 

 

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A New Sense of Normal: Figuring Out Life After Breast Cancer

The end of treatment was both exciting and terrifying, much like riding a roller coaster, and I found the finish confusing. For months, I had a routine and aggressive therapy to fight the cancer, along with a great team of doctors and the wonderful support of family and friends. Then, it was over and I had to figure out my new sense of normal.   

jennifer w parker (bald)

Jennifer and her son, Parker, in 2000.

Our world turned upside down in 1999 when I was diagnosed with breast cancer at age 27 while 22 weeks pregnant with our first child. With no family history, I was fortunate that my obstetrician took it seriously when I showed her the lump in my breast. A normal pregnancy quickly changed into a high-risk one while I underwent a mastectomy and three months of chemotherapy. The day after my last treatment, our son, Parker, made his entrance into the world five weeks early, but completely healthy.

Once treatment ends, friends and family are often hoping to see the return of the “old you.” However, I wasn’t the same person I’d been before my breast cancer diagnosis. I didn’t consciously let it change me; but still, I was a different person. I was figuring out how to be a new mother, dealing with a completely altered body and facing my mortality at a young age. I had lost my innocence. I had also lost trust in my body’s ability to fight anything that might be lurking. After receiving so much attention from my doctors, family, and friends, I felt a bit alone when it ended abruptly. Suddenly, I was supposed to move past this episode and go back to life the way it used to be. That was impossible, so I had to find my own new sense of normal.

Finding a New Normal

It has been more than 16 years since I heard the words “You have breast cancer.” Visits to the doctor are less frequent, but the anxiety of waiting for medical test results serves as a sharp reminder of my new normal. Although having cancer is anything but a blessing, it has brought many wonderful things in my life. The greatest gift has been meeting so many incredible women and men over the years because of our shared cancer experience. I don’t know that our paths would have crossed otherwise.

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Nordie’s at Noon co-authors Jana, Patti, Kim and Jennifer

My new normal has evolved over the years to include:

Being an advocate for myself and others – My advocacy training has taught me how important it is to stand up for those who are unable.

Paying it forward – It is important for me to give back and be there for other women facing breast cancer. Being a SurvivorLink volunteer allows me to help others when they need it most.

Finding my inner cleavage – It has not been easy, but I have learned to love the body I now have – scars and all.

DSCF4226favLearning to take time for myself – As a Mom, it is hard to be selfish with your time, but I know it is important. The time I allow for exercise each week is a huge stress reliever.

Learning to not take life too seriously – Anyone else find themselves on the AARP mailing list after your diagnosis? I could share many funny stories on mishaps with my breast form before my reconstruction.

Taking risks – Having cancer allowed me to be more of a risk taker – including co-authoring a book with four “breast friends,” saying yes to things like zip lining, riding 200 miles in YSC Tour de Pink and having the courage to leave my comfortable corporate marketing career to follow my passion and work for YSC.

Valuing each and every day – Life after breast cancer included the wonderful surprise of our daughter, Emma, born in 2003. Life is not perfect and some days are harder than others, but I am truly thankful every day to celebrate this roller coaster of life with my family and friends.

Celebrating Cancer Survivors Day

National Cancer Survivors Day® is a worldwide Celebration of Life that is held on the first Sunday in June. It’s a day when people around the world come together to recognize the cancer survivors in their community, to raise awareness of the challenges these survivors face, and, most importantly, to celebrate life. There are an estimated 250,000 breast cancer survivors who were diagnosed with breast cancer before their 41st birthday.

Anyone who has been diagnosed with cancer knows that each day is a gift that often comes with a lifetime of side effects. While we are celebrating survivorship, it is also a time to reflect on the many who have been taken too soon by this horrible disease. Each year, breast cancer takes 1,000 young women – interrupting lives and dreams, and forever changing those who love them. My dear sisters, you are not forgotten.

We each have to figure out our new normal and the YSC Community is here to help. No matter how far out you are from your original diagnosis, you always have a home.

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More Info

Read more about Jennifer’s story of “Battling Breast Cancer While Pregnant”

Download or order a copy of YSC’s Post-Treatment Guide to help you navigate life after treatment ends. YSC has guides to help you from diagnosis, post-treatment, long-term survivorship and living with metastatic breast cancer.

Interested in learning more about advocacy? Find out how you can make a difference.

Learn facts about young women and breast cancer and the issues they face.

 

 

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Recognizing the LGBT Community

1024px-Rainbow_flag_breezeJune is Pride Month – 30 days dedicated to taking a stand against discrimination and violence toward lesbian, gay, bisexual, and transgender (LGBT) people to in order to promote their self-affirmation, dignity and equal rights, increase their visibility as a social group, build community and celebrate sexual diversity and gender variance. Although this is a time to highlight many of the wins the LGBT community has achieved over the years, this community continues to face a wide range of health disparities. As an organization focused on young women affected by breast cancer, we recognize the many barriers that LGBT people face and their negative impact on breast cancer diagnosis, treatment and beyond.

Barriers to care

LGBT people face a number of barriers to receiving quality healthcare. First, they’re less likely to have health insurance, because many employers do not provide health insurance coverage for unmarried domestic partners. Another major barrier for LGBT people is that they’re less likely to receive routine health screenings, which can result in later diagnoses. LGBT people may not seek routine care for various reasons, including insensitivity from healthcare providers who aren’t knowledgeable about their health needs and concerns; varying levels of discrimination within the healthcare system, including from healthcare professionals; and discomfort discussing sexual orientation with healthcare providers.

One of the first steps to encouraging LGBT people to better utilize their healthcare options starts with the healthcare professionals themselves. Healthcare providers should be culturally sensitive to and knowledgeable about the specific health concerns of LGBT people, and create an environment where they feel safe. Improving the cultural competency of healthcare providers will improve the level of care that LGBT people receive and ultimately translate into better health outcomes.

Some organizations, like the National LGBT Cancer Network, provide trainings to increase healthcare providers’ cultural competence to enable them to more effectively treat LGBT populations. Interested in learning more about cultural competency trainings? Their website has more information about their offerings, including their LGBT Cultural Competence Best Practices Manual.  

Higher rates and risk factors

Besides the many barriers that LGBT people face in accessing quality care, they also experience higher rates of breast cancer compared to heterosexual women. This may be attributed to a cluster of risk factors that tend to be more prevalent among LGBT people such as smoking, alcohol consumption, obesity and either giving birth later in life or not at all. All of these may stem from the stress, stigma, and discrimination associated with their sexual orientation.

Not enough research!

We need to more fully understand the barriers and risk factors that LGBT people face so their healthcare needs can be better addressed. Research on this population is lacking, particularly in regards to cancer incidence. Data that is available is limited and contradictory, often based on sample sizes too small to draw meaningful conclusions. Without adequate data, meaningful policies and interventions cannot be developed to combat cancer disparities and LGBT communities are left without the information needed to advocate for change.

Future research focused on breast cancer among LGBT people is essential if any progress is to be made to support this community. As an initial step, all national health surveys, cancer registries and medical records should include sexual orientation and gender identity (SOGI) questions. With more accurate and complete information, the health disparities that LGBT people affected by breast cancer face can be addressed.  

To learn more, read The National LGBT Cancer Action Plan, a white paper from the 2014 National Summit on Cancer in the LGBT Communities.

Where do we go from here?

The first thing YOU can do is be your own best health advocate. Keep up with routine health exams.  Regardless of your sexual and gender identity, you should feel completely comfortable with your current healthcare provider. If you don’t, find another one! Ask friends, family or your community for a recommendation on a healthcare provider who is going to make you comfortable and address your individual needs.

Check out our Community Forum, which offers a whole section on LGBT Topics and an opportunity for you to connect with others within this community. There are already engaging conversations happening, but feel free to ask your own questions and seek support.

Order a free YSC ResourceLink Guidebook. This guide offers a wealth of information and resources, including a section just for women who partner with women.

Take advantage of our support programs that will connect you either online, in-person or one-on-one with other young women affected by breast cancer. YSC staff can help put you in touch with someone you can relate to, including people from the LGBT community.

If you’re a healthcare provider, consider taking a cultural competency workshop with your colleagues to better ensure that your LGBT patients receive the care they need. Additionally, it’s important to provide relevant health materials to LGBT patients and to update all medical forms to be inclusive of different sexual orientations and gender identities.

Additional Support

National LGBT Cancer Network: Advocating for Health Equality

Whitman Health & Wellness: The Mautner Project

CenterLink: The Community of LGBT Center

Howard Brown Health: Trans and Gender Non-Conforming Health

As we look forward

At YSC, we are committed to offering programming that is inclusive and addresses the needs of women from every background. In order to ensure we continue to do so, we are reviewing the results of our recently concluded Diversity and Inclusion Survey. Although the survey results are still pending, we intend to use our findings to improve our offerings for specific populations, including young LGBT people affected by breast cancer.

 

Research Sources:

 – National LGBT Cancer Network: Lesbians and Cancer
 – Susan G Komen: Breast Cancer Statistics: Lesbians and Bisexual Women
 – Dr. Susan Love Research Foundation: What do we know about lesbians and breast cancer? Not enough! by Liz Margolies
 – The National LGBT Cancer Action Plan: A White Paper of the 2014 National Summit on Cancer in the LGBT Communities by Burkhalter, J. E., Margolies, L., Sigurdsson, H. O., Walland, J., Radix, A., Rice, D., Maingi, S. 
 – Office on Women’s Health, U.S. Department of Health and Human Services: Lesbian and bisexual health fact sheet
 – The National LGBT Cancer Network: Barriers to LGBT Healthcare  

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